7.31.2007

37 weeks, my 7 yr old is turning 8, and starting more supplements

There's so much going on for us, I can't keep track. But I'll try.

-I'm 37 weeks pregnant today. 8 days until the amnio, and 10 days until the scheduled c-section. Today, I had a regular appt with the OB (waste of time, as I saw a nurse who asked me if I had any questions and when I said "no", said "okay, see you later"). Then I had a NST at the hospital and they kept me hooked up for 1.5 hours because this little guy's heartrate was in the 180's. Excited, I suppose. Eventually, they let me go, thankfully. So, now, I sit and wait 8 days until the next step in this process. I cannot WAIT to get this pregnancy over with. I'm gonna have a HUGE martini!

-Zoe will be 8 on Sunday. How is that possible? I mean, just yesterday, she was born ... 8lbs. 9ozs. Now, she'll be 8 and she's starting the 3rd grade in a few weeks. I just. I don't know where it goes. The time. She's a typical 8 year old. She's turned into quite the young lady, and the best big sister in the world. She's so patient with Holden and even though she's aware there's a chance (although, be it small) that Jackson will also have "problems", she's ready to accept him and help and love him just as she does Holden. She has such a big heart, and is one of the most loving kids I know. She's respectful and parents tell me all the time what a good kid she is. We're so proud of her.

-Now that Holden's rash has disappeared and his 'negative' behaviors have subsided, we're starting the epsom salt rubs again. Along with starting the L-Carnosine. We're holding off on the Alpha Ketoglutaric Acid for now - until we check his ammonia levels at the next blood draw - scheduled for August 21st. I'm starting with a very diluted mixture of the salt rubs, hoping not to irritate his skin. And, we start off with 2 caps of L-Carnosine daily, working up to 4. I'm hoping that he has good results with these.

My friend came over for dinner this past Saturday. She's a behavior analyst and has been doing this type of work for 11 years. She told me that he's definitely improved since the last time she saw him (about 3-4 weeks ago). Said he's more engaged, and more aware of things going on. She said he's moving in the right direction - and THAT made me happy. It's hard for me sometimes to see the progress - I'm so closely tied to him. I'm never away from him, and so, people who may not see him all the time - see the changes before I do. Or at least, recognize them as progress.

We're busy over here, but i keep telling myself that August is going to be a good month!!!!

7.29.2007

sunday


We decided this weekend to cut Holden's hair ourselves, so we didn't have to deal with the "freak out" sessions at the hair cutting place. I love it, but it makes him look more like a little boy, than my baby.
He's also improving since my last post. No more rough, red rash, and no more "rocking" or strange behaviors. Thankfully. I honestly think he was going through a detox stage, in addition to having a bad reaction to being taken off the anti-fungal meds. Whatever it was, it seems to be over and I'm just thankful.


7.25.2007

stepping back

Holden's developed some 'strange' symptoms / behaviors over the past week. So I spoke to Dr. Berger via phone last night and we've decided to take a step back. He said when negative behaviors develop, he likes to "undo" the last step taken to see if thats causing it. We're taking Holden off of the salt rubs, and off of the alpha ketoglutaric acid - for 7-10 days to see if there's improvement. I also ran out of his anti-fungal medication and failed to refill it fast enough. He's been off of the diflucan for 4 days, which could have allowed yeast to grow back in his intestines. We're to start that again, immediately.

His symptoms/behaviors over the past week (in order):

-rough, red skin rash on his arms, upper thighs, and stomach
-vomitted (once - not sure if this was even related)
-constipation
-after constipation; black, sticky poop with "specks"
-acting frightened at a lot of things - TV, when waking up in the middle of sleep, etc.
-new stimming behaviors, including rocking back and forth (something he's never done)

Hopefully the symptoms will improve and we'll slowly add things back in to see what may have caused the negative reaction.

7.23.2007

Pains

I've been doing the epsom salt rubs on Holden for about a week now. Today was the first time I did a morning rub, and it wasn't so bad. He doesn't like the way it feels when it starts to dry though, so, once it's dry, I wipe it off with a wet paper towel. It seems to make him a bit lethargic though. Don't know if that's the epsom salts, or if he's just been in one of those moods.

I emailed Dr. David's nurse today because he's developed a red, rough rash on his arms, stomach and legs. Kinda weird because I thought it might be the rubs, but, he gets most of the salt on his back because he can't mess with it, and his back is fine. Sooo. Not sure what that is, but I emailed to find out. He was also a bit red around his eyes, and his cheeks were red, too - this past weekend. He did the same thing when we went through taking the dairy out of his diet. It lasted a few days and then went away. So, maybe it's just his bodies way of detoxing, I don't know.

Anyway. He's into the Wiggles now, so we watch about 10 episodes a day. He loves it. He runs around when they sing and dances. He jumps on his trampoline. I'm okay with it, because it gives me an opportunity to dance around with him and try to get him to imitate some of the gross motor skills they're doing on TV. And, the activity seems to put him in a great mood.

Although, right this instant, he's wanting to be held, so gotta run. Will update more later.

7.15.2007

Dan! Doctor Update

Holden had an appointment with Dr. Berger last Friday. He explained the bloodtest results to us and we've added a few things to his mixture of supplements, vitamins, etc.:

-Alpha Keto Acid - this is to lower his ammonia levels (1 cap / day).
-Epsom Salt Rubs - in addition to the epsom salt baths because his sulfate levels are still too low (twice / day).
-L-Carnisone - Holden has none of this in his system and Dr. Berger explained that studies show it improves symptoms in ASD kids; so this was something he really wanted us to start. We will start 2 caps, 10 days from now, and slowly work up to 4 caps per day.

We have a repeat blood test on August 21st (joy, joy - I HATE having to stick him again) at which time he will also administer an IV dose of glutathione. He's going to start with a low dose (300 mg.) and work up to a higher dose if he shows improvement. Holden's glutathione levels were one of the lowest Dr. Berger has ever seen. He would like to repeat this level just prior to infusing with the IV dose. He said if the levels are truly as low as they show on this recent blood test - then we should see a dramatic improvement with the IV dose next month.

Our next appointment with him will be 2 weeks after the bloodtest and IV glutathione.

We discussed chelation and he explained that it's very important to get the yeast levels down before starting full chelation. If not, it could have the opposite effect. We will continue the diflucan for now and will send in another stool sample test in 2 weeks to see if the yeast has cleared up. If not, we will add at least 2 weeks of diflucan onto the month he's been on it already. This will also help with his high levels of testosterone. Dr. Berger said this could be a long term medication, but he would lower the dose if using only for maintenence.

All in all, it was a good appointment. Hopefully we will continue to see improvement in Holden. I'm hopeful.

7.12.2007

dear baby # 3,

kid, seriously, you're killing me. i'm tired, oh so tired. all.the.time. i've taken to raspberry mocha frappachinos from starbucks to get me through each day. i can't sleep at night because you're so damn heavy now that it hurts my back, hips, butt, and every organ on the inside - especially my bladder. my poor bladder - i was up 4 times last night, and lost count today of how many times i've gone to the bathroom.

you're moving like CRAZY. yesterday, i actually had to get up and walk around because i could feel your feet in my ribs. you settled down, but, started back up shortly after i sat down.

you have a schedule now. pretty quiet in the evenings - from about 4-8. then, around 8, 9pm, you're up and going strong. rolling now, not just kicking.

i'm having twice weekly NST's now, and this morning, you decided NOT to cooperate, so i had to lay on my side (uncomfortable) so they could get some reaction out of you. i reassured the nurse that you are indeed moving around in there, but your heart rate didn't elevate like they wanted. so, i had to stay connected for an extra 10-20 minutes, thankyouverymuch.

even with all of that, we cannot wait to see you and meet you. your sister is going nuts. she wants to rock you in the rocking chair. your brother is rubbing my belly and actually saying "baby" - a fete in itself. he's constantly putting his head on my belly, and has discovered that mama's boobs are now incredibly huge.

so, hurry! well, don't hurry, because we're not entirely ready. but, august 10th can't come fast enough.

love,
mama

7.05.2007

blood test results

So, I thought I had already posted about this, but apparently my pregnancy mind is out of wack - surprise, surprise.

We got Holden's blood test results back end of last week. We haven't spoken to the doctor yet about them, his appointment is Friday, the 13th. So, we'll really find out what they all mean at that time.

But, from what I can gather and what Dr. Google has said - his results weren't good. Which, in reality, this is the one time that I'm all for his test results being "bad". Why? Because it means that there's a reason for things. Now I have proof that his natural ability to detox is just not there. Which means that he's full of toxins. Which means that we can actually DO something about it, and hope that it increases his ability to learn and focus and progress.

His ammonia levels are high. Dr. Berger thought they might be. He said this would explain the "spaciness", and cloudiness he displays. For his metabolic panel, he had low levels of 2 out of 3 things his body needs to detox. He's low in sulfate and glutathione. His regular blood tests showed low levels of a few things, and increased levels of others. When I google those things and autism - he's pretty much text book for things he's "off" on. He does have extremely high levels of zinc, which is strange. Normally, kids on the spectrum have a zinc deficiency. So, I'm not sure what that's about. I'm sure we'll get more clarification next Friday at his appointment. And then we'll learn what the next step is in his treatment plan.

In other news, 4th of July was pretty much rained out for us. No fireworks, except for the one's the neighbors set off outside. Zoe was happy with that, though, so that was good. I went for my weekly NST this morning. Everything's good with the baby so far. On Tuesday, I'll be 34 weeks and have to have NST's twice a week, which is hard with 2 other little one's and a husband that needs to go to work everyday. But, somehow, we'll make it work. We always do.